Now I know why I was given a loud voice

So to say that we have been stressed in the past couple of days is definitely an understatement.  I woke up Thursday morning at 3:30 am.  I have NO idea why.  I was wide awake and could not fall back asleep.  So I did some work and then did some follow up stuff for fund raising for St. Jude.  Around 5:30 am, Lucy woke up. she NEVER gets up before 7.  She is our sleeper.  So I immediately knew something was up.  I felt her and yep! sure enough, she was warm.  I took her temperature and it was 100.4  That is the cut off for calling St. Jude.  Normally, they would tell us to wait an hour and take it again; however, she had an ANC of 20 at clinic the day before so I knew it was probably best to just take her in and start antibiotics.  The quicker they start those, the better chance of survival if she has a nasty infection.  So I woke up Zach and told him that I was packing and asked if he would call the clinic to let them know we would be on our way.
Zach took her in and they had no beds available for her.  They told Zach it would be 90 minutes.  Which is NOT acceptable.  If she needs antibiotics they should have been started 30 minutes ago.  Luckily, a nurse from our St. Jude clinic saw Zach and told him and Lucy to go on back to the isolation room in clinic.  She accessed Lucy's port, drew blood for cultures, and started IV antibiotics.  After I got Jack on the bus that morning, I headed up to Peoria. They had JUST gotten into a room when I got there.
So basically, Lucy wasn't running a fever anymore, and they did check her 3 times because they kept getting different readings from the thermometer at clinic.  The first was 98.9, the second was 102.2, and the third was 98.5 all within a 10 minute time period. Well, since she dinged the 102 (whether or not it was accurate) she got automatic inpatient.  At the time, we were ok with that.  We knew her numbers were low and risk of infection and complications were high, so we were on board with the stay.
We waited for our doc to come see us and give us a game plan. He never came.  Instead a resident did.  He told us she looked good, and that as long as her fever was gone for 24 hours, we could go home the next day. They were going to run antibiotics every 12 hours as a precaution.  So we thought "ok, let's settle in order Lunch and make the most of this".  I must mention, we were put in the same room we got our diagnosis in.  So I had a lot of anxiety going into this.  Brought back a flood of unpleasant memories.
So our first mishap started with the kitchen. We ordered lunch for Lucy.  2 hours later it came.  We told them she couldn't eat it because she is on a low bacteria diet and anything prepared has to be consumed within an hour of cooking it.  Of course Lucy starts screaming and crying, she's hungry.  So they apologized and made her new food and it was up there within 30 minutes.
So as the day went on medication started coming in for Lucy that she is NOT on.  We said "what is this? she is not on any medication except for the antibiotics you gave her".  The nurses said they still had orders for all her medications.  We refused the medication and asked that they get that fixed because if she were to get chemo, that would be fatal. so the nurses said they would work on it.  Still no visit from Lucy's doctor.  And then more mention of medication.  Zach was irate.  He went down to the nurses station and said he wanted to remove Lucy from their facility.  He said given the circumstances, he felt we could take better care of her at home.  We could provide an environment that wasn't filled with sick people, we could provide hot food, and we wouldn't give her medication she can't have.  The nurse told Zach that was his choice, but that we would be responsible for teh bill if we left against doctors orders which would roughly be $13,000. Their was conversations with the doctor and nurses after that of sending us home on an antibiotic and the doctor really wanted us to stay.  Zach said if the medications could be taken care of, we would stay.  They said they had taken care of it.
Shortly, after Zach left to go home and take care of Lucy. Before doing so, he went to the nurses station and told the Charge nurse that nothing was to be given to Lucy without consulting with me first.  Even if that meant waking me up in the middle of the night or waiting for me to use the restroom.  So Lucy and I hung out.  It was boring, but I got some quality time with her.  It was nice.  Around 8 pm, pharmacy walked in with about 4 medications for Lucy.  I said "what is that?"  She said "these are her meds that were ordered".  I was mad. I said "no, we don't need any medication".  She apologized, and I know it wasn't her fault.  She was doing her job, so the nurses came in.  I asked what was going on and they said it looked like they cancelled the antibiotic but left all other meds in there.  So I called Zach to let him know.
well that's when the shit hit the fan.  He called the doc on call and chewed him out pretty good.  I have never heard Zach yell with such force and almost cry doing it.  we were upset. What if they messed up and she got chemo?  it would kill her, literally.  After Zach made that call, a resident came into Lucy's room along with a bunch of nurses and the doc on call was on speaker phone.  they were all denying that chemo was going to be given or ordered.  And I told them I didn't care what they were telling me, I cared that any medication at all came in her room when it should not have.  So I sat there with them and watched them cancel all orders for the meds except the antibiotics.  I communicated to the nurse I still wanted to be woken up with any thing they put in her port or mouth including a thermometer.
So around 9:30 they came in with a syringe. I said "what's that?"  She said it was the antibiotic just in a different form.  So I asked to read the label just to be sure.  And it was in fact the antibiotic.  So after that ordeal, I fell asleep with lucy. I slept in that bed with her.
So the next morning, the resident and the doc came in pretty early asking when Zach was going to be in there so he could talk to him.  Then another doctor from clinic came up to see how we were doing and talk to us about the things that had occurred the night before.  We love this doctor and I trust him.  He said he thought Lucy should stay one more night because of low counts and to be sure nothing grew in the cultures they took.  He also explained a few other things to me and told me she was receiving antibiotics every 8 hours now and had gotten her last dose at 4 am.  I said "WHAT??"  why didn't anybody wake me up?  I was upset again. I specifically asked many times to be woken up for meds.
Anyhow, a couple hour later Zach arrived back to the hospital and we sat down with the doctor that was in charge of her care and the nurse manager.  The doctor said he wanted to explain what happened and that protocol had not been followed.  Zach said he didn't care what had not been done, his point of view was that the doctor was not taking responsibility for what happened.  He felt ultimately it was the doctor's responsibility.  And the doctor kept saying "yes, its my responsibility, but....."  Dale Carnegie 101....never apologize with a "but".  He kept blaming the nurses then the resident.  It was frustrating.  We told him we would stay another night only because the doctor we trusted had came up and looked at her and told us his opinion.  I don't think anything sunk in with the doc on call about how frustrated we were.  He kept saying we would put Lucy in danger if we left the hospital.  And what we were trying to communicate to him was that we felt that her being in the hospital was far more dangerous than at home.  We said we had a clean environment where nobody was sick (unlike the hospital filled with sick people), we could prepare fresh hot meals, and we wouldn't give her any medication she shouldn't have.  We were trying to explain the seriousness of the situation by explaining that while we knew she should be inpatient, we were not comfortable with her care. It went over his head.  so we finally just ended the meeting at that.
Lucy stayed another night and the next afternoon she was released. We are obviously not their favorite patients either.  We got the cold shoulder from a few of the employees, and the "looks", and I caught several nurses talking about us at the nursing station.
Needless to say, Lucy is at home, she still has a very low ANC, but we are all more comfortable here.  I think sometimes people think doctors are like a god because of how far science has come in healing people where once they would have not been healed.  And some people trust whatever the doctor says or don't feel like they can complain at a hospital. Truth is our voice is all we have in this type of situation.  Our voice is Lucy's advocate.  And while we made enemies, I don't care.  I am thankful that I am as loud and boisterous as I am, same with Zach.  That voice has gotten me in some trouble before, I am not gonna lie, and I know how some people cringe when I share my opinion because its not always the mainstream idea, but I have learned now that all of that was for a specific reason. It was practice in preparing myself or how to use my voice in a powerful way to protect my child and myself.  Lesson learned:  Just because you didn't go to medical school or nursing school, doesn't mean you can't ask questions, it doesn't mean you can't question some of the care you receive, and most importantly, it is actually your right as a patient to receive and demand the best of care whether they are short staffed or not.  The mistake that could have been made in our situation would have been fatal to Lucy.  That's food for thought....